Hi Magpiemaggie,

I hope that you are doing well. I am so sorry to hear that genetic testing has been overlooked for you. You should have been offered this under the Nice Guidelines. I am sure that you won't be looking forward to more testing, and I sincerely hope that there is no genetic link.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you, hope your well too. 

I got bloods taken and now sent off for testing. Told it will take a couple of months for results. It was difficult having to relive what I had to go through with regards to original diagnosis/treatment but also had to discuss what I would do if test comes back positive. It was brutal. 

I am really unhappy that this wasn't done when first diagnosed. I feel let down by the NHS.

I'm hoping for a negative result, not sure what I'd do if positive or inconclusive. 

Also wondering how many others have fallen through the cracks and could be completely oblivious to potential danger. 

xx

Hi Jolamine

Thank you, hope your well too. 

I got bloods taken and now sent off for testing. Told it will take a couple of months for results. It was difficult having to relive what I had to go through with regards to original diagnosis/treatment but also had to discuss what I would do if test comes back positive. It was brutal. 

I am really unhappy that this wasn't done when first diagnosed. I feel let down by the NHS.

I'm hoping for a negative result, not sure what I'd do if positive or inconclusive. 

Also wondering how many others have fallen through the cracks and could be completely oblivious to potential danger. 

xx

Hi Magpiemaggie,

You're the first person that I've heard of this happening to, but no doubt there are others. I was offered this straight after diagnosis, but my daughter didn't want to know. She said that she would rather take her chances, than live under a perpetual cloud. She does check herself routinely though. There is nothing much that you can do if positive, apart from ensuring that your family have regular monitoring.

Here's hoping that you don't have to face that problem and that you get a negative result.

Keeping my fingers crossed for you.

Kind regards,

Jolamine xx

Hi Jolamine

I've met with my breast consultant, who says the policy to offer genetic testing to those diagnosed with bilateral cancer has been in there for years.

We had a discussion about breast cancer in the family but told theirs don't count as they were diagnosed post menopause.

I had blood taken and sent to genetics and should hear back in two months time. 

Hi Magpiemaggie,

I am glad to hear that your genetic testing has been done at last. Why this was overlooked initially, beats me. I expect that this means more anxiety while waiting for the results, but I hope that it doesn't unearth anything untoward.

Fingers crossed!

Please keep in touch and let us know when you discover the outcome. We are always here for you.

Kind regards,

Jolamine xx

Thanks Jolamine 

I'm not anxious just angry. The conversation with the consultant focused on the bilateral cancer and the different cancers in both, but they thought I was post menopausal at the time of diagnosis, which I wasn't. So wrong data and lack of continuity of care is to blame.

Its just a waiting game now. I will update once results are in. xx

Hi Magpiemaggie,

I would be furious too. Did they actually have the wrong data, or did they fail to read the right data? 

Jolamine xx

Hi Jolamine 

Poor record keeping, disjointed working between departments meant no record was kept of menopausal status. Thank goodness my case records were sent to another hospital which meant a new set of eyes went through my file and found anomalies. 

HI Magpiemaggie,

This is scandalous. Had it been some other aspect of your case, your life could have been on the line. I'm so glad that the new set of eyes, in the other hospital, were awake.

King regards,

Jolamine xx

I have, rare, Primary Peritoneal Cancer, and had a genetic blood test in May last year. The BRCA1 result came through very quickly, and was negative but I still haven’t had the result for BRCA 2. If it is positive I can have medication but it has to start within 3 months of last chemo.I finished chemo on 17 November so the window of opportunity is getting less and less. 

Hi EAH

Sorry to hear of your experience. Interesting that only one result came back. I understand the worry of waiting esp. when there is a tight timescale. Have you chased this up? 

I know nothing about how the testing works but was told it's a 2 month wait.

Fingers crossed you'll get the results soon xx

MacMillan nurses have been chasing for months. I don’t know where to go to chase up as testing is done at a different hospital to the one I attend.